Severe leg weakness and walking difficulty-is it normal with CFS?

I don't know what to say...it's been three years of excruciating pain in my feet on my soles upon impact to begin with, so I saw a gland person who said I had lymphodema..I dont,three years and no swelling later,I'm still just fat. In those three years I've noticed my pain is now a constant zingy,tingling,pins n needles pain,from my toes to my hips...how in.my left arm, up to my jaw..whilst my right elbow has become weirdly swollen and more painful than my legs?! This arm pain elbow area began three weeks ago,whilst I was waiting for an mri spine and brain scan..and electricity tests on my kegs n arm. Both scans were last week and the dr has rung me tonight to say they're clear, although clear of what he didn't specify. So I'm now being referred to a neurologist. Some days,some hours,some minutes...I just can't walk at all..I haul myself along the kitchen work surfaces. It's simply stops...or it starts, with no pattern...but the pain and tingling remains a constant. No one has any ideas... Itself diagnosed chronic fatigue but I can't believe it causes this amount of pain?! If you have any diet tips or natural remedies then please tell me...through all this I can't take painkillers as I'm so sensitive to meds,they just zone me out and I'm a single mother in full time work...I can't be zoned out. I've not considered ME, I don't know anything about it? Dies it sound like I have it to you guys...help me out here, Dr's take ages and look at je as if I'm bonkers when I try to tell them of my legs..

" well doc, have you ever sat on the loo reading, your legs go dead, then they go berserk tingling as they come back to life..a weird dead yet alive pain...no?.. Ok nevermind,I'm probably just too fat you're right"

Life is getting hard and I look at people who have no pain and I can't remember what that feels like anymore. :-( I'm getting married in April, he doesn't live with me yet and has only seen a few dead leg attacks..but I'm so worried I'll need wheeling down the aisle. Please help meeeee!! Xxx

Hi Diana

Everyone has there own opinion as to what causes CFS. To me, it's a malfunction in the brain and communication system in the body. Walking difficulty is very common, to me CFS is Ms without permanent nerve damage. The body is correcting itself but has a hard time maintaining it. It all starts in the brain in my opinion. Im taking some products that has helped me . If interested pm me and I'll tell you about them. How are you doing?

Had CFS for only 3 months now, but the muscle weakness/pain is so bad with any physical activity.

One time I tried leaving my house to go for a drive (no walking), and just from the driving motion, my arms felt extremely weak after and during. 

Hi! I see this post is over a year old. I hope you get my message. I've been going through the same thing. It's on again off again. Definitely more physical activity triggers a flare. I'm currently being treated for RA, but I know walking difficulty and weakness is not a part of RA disease process. Did you ever receive a diagnosis?

Hi NP, if you look a little way below, you'll see how we seem to be quite similar in our symptoms. My issue is definately mainly my legs and the sudden extreme fatigue after doing such tiny things. At one point I was in a wheel chair and couldnt drive the car. It is very up and down depending on what I'm doing if I'm not very careful. If you'd like to know more, just ask. Good luck with your journey and diagnosis x k

Walking troubles suck. Having said that, I've been diagnosed with CFS for a couple years, now. But in 2002, I couldn't walk more than 10-15 minutes at a time, for a year, before my legs would get like lead, barely able to move them. That was my worst walking dysfunction time. My 12 y/o, I taught to cook, while I sat on a barstool, each night, after cashiering, part-time, as a single Mom.

I excercised more and I got better, in kind of a relapsing/remitting way(?). But, in 2013, my b/f timed me to b taking 30 minutes to walk one block, to an event.

I use a motorized cart in large stores like grocery, Home Depot, Walmart-- for 13 years, now-- due to ankle pain, and now, the past 4 years, because of the stupid CFS (maybe it just progressed, on and off, to this point, but I got severely ill 8-19-2011). I'm VERY good on it, lol!

I use fold-out bar stools in my kitchen, bathroom and laundry room, as it helps with the POTS syndrome/a "standing disabilty", a common co-morbidity. I've tried a shower chair, which does nothing for my arm weakness-- tons of hair to shampoo is a curse, when you're so WEAK. Showering is so hard to fit in, along with my other stuff in life, which is only about 2-3 hrs./day worth. I hate being so terribly bad off.

If I don't have my groceries packed extremely lightly, carrying them in makes my legs stop walking.

I haven't walked, successfully, more than a block, since an SUV ran me over on my bike, 9-28-05. But I DID get coerced, stupidly, to walk 2 blocks last week. I ended up more bedridden last week, than usual (over-doing it, and stress exacerbates things-- I don't sit up much, when in bed-- the POTS aspect (blood doesn't circulate to my uper half, too well-- took a while to be diagnosed.

Oh, if I eat and drink trigger foods, within 24 hrs., I can't walk, for a bit. If I tighten (partially squat a BIT, my legs can walk, a bit easier, when I'm having a "bad spell". Putting my feet up, helped me, at work, around 2007-8, with the walking problem.

Trigger stuff: 1 drink, a dessert, carbs, fruit, caffeine-- a combination of these in a 24 hr. period.

Several years back Pilates core exercises helped me rebound some.

My legs go as slooowly and stiffly, as my Parkinson's neighbor's legs do, when affected.

I've read lifting can exacerbate.

I am mostly homebound. Quit driving 2 years ago... long story. But I don't often have walking troubles. Early on, tho, in 2011, I had them 4 times, in 4 days.

I, normally, don't push myself, finding working around my limits does better.

I haven't had more than a drink OR a dessert, in one day, for 4 years, now (mostly). I get numerous neuro. problems... eyes... tremors... leg movement limitations, if I do imbibe more than that.

So that's it on severity, over the years. Oh, going uphill, I think, can cause, sometimes just a moment of leg dysfunction, if I'm tired, I think is when that happens.

I quit taking walks in '07, due to my ankle pain. I'm better at standing, from a sitting position, since sitting up in bed, a bit more, AND from doing some hip/core exercises.

So, existing in a more bedridden status, I wouldn't know how often my walking problem would occur, if I WERE up more.

After sitting to urinate, when I've stood up, I've had problems walking, over the years (due to lower blood volume or sudden lower blood pressure issues??)... after waiting 2 hours for a Dr's. appt. it's happened, regularly... also, maybe after blood pressure has simply gone up, at a Dr's. apt., then it suddenly goes down afterwards, before I leave, it seems to me, may be a reason.

I used to wear myself out, running errands, 'til i couldn't drive, and friends had to drive me home, occasionally (retired and available friends, and boyfriend-- lucky me-- ya, right)! I THINK stopping and resting a LOT, when i DO drive, once in a while, AND skipping the coffee shop break helps (coffee causes exacerbations, tremors, i believe-- even decaf). I drive my b/f's car home from the airport, once a blue moon, and run errands a bit-- but i don't drive more than 15 minutes at a time.

My level of disability is pretty great, i feel. It goes past being in a wheel chair, mostly (POTS Syndrome aspect). I tried a wheel chair at church, 3-4 years ago, but I'm just sicker in the mornings, so i quit church. I have to care for myself and my home, more importantly (and rent 2 rooms-- an exhausting and stressful factor, key to surviving, financially).

Internet, t.v., jigsaw puzzles-- no books (an old fav past-time), putting my feet up (severe POTS circulation problems) are what i do best.

Good luck.

For POTS, a common accompanying illness with CFS, I eat lots of salt and drink plenty of Smart Water (electrolytes) (no teas- they deplete blood volume), put 4"-6" of bricks under head of bed, wear compression hose ($60 script kind) or body shaper (girdle- like $10 stuff), put my feet up a LOT when out of bed, never stand u quickly. For CFS, i pace myself super slowly (resting consistently) , super limit my carb intake, and other triggers (alcohol, for cfs and pots... desserts... and fruit and caffeine is a trigger for one or the other illness-- i think fruit is the cfs trigger). Also, if i rest til evening, each day, my stamina does best... hard to do, sometimes, though.

Sorry to be verbose, these two postings.

Oh, after discontinuing taking 12 homeopathic and vitamin pills, two times a day, i did better. I was over-doing the sleep aids, i know that now.

With POTS, teas are horrid for my health. Pediatric dosages are better, for one of my main issues, I've read. I don't take anything, presently, but i was prescribed vita. D, my very last Drs. appointment.

My health care has been on again, off again... long story. No cure for cfs... except for what I've recently read, requiring further investigation. The pots initial treatment back-fired, and was horrid, yet there are several other treatments i must pursue... little by little, bit by bit. It's hard when you can't even handle the very basic care of self and home well enough.

Good to feel at home, here, even if only for a moment. Thanks for the platform, truly.